Monthly Archives: February 2014

Connect the Dots, la la-la la-la

When I was a kid my favorite Saturday morning show was Pee Wee’s Playhouse.  Yes, I said it.  That show was hilarious, and even moreso now that I’m an adult.  But that’s not what this post is about (per se).  Do you remember whenever he would do the connect the dots bit?

peewee

Hilarious.  The day before I moved down to NC, my best friend and I were hanging out at my grandmother’s house and we found an old VHS tape of Pee Wee’s Playhouse.  As soon as he busted out with “Connect the dots, la la-la la-la” we LOST it.  In fact, any time someone mentions “connect the dots”, I think of Pee Wee.  Thank you America.

So what am I getting at?  In the world of heart babies there are lots and lots of dots, depending on your kid.  Nolan has a whole lot of dots in his life to connect: cardiology, G.I., physical therapy, speech therapy, cranio-facial, etc.  The big problem I’m finding is that these dots just kinda float around there with nothing to connect them.  Now that Nolan is done with surgeries for a couple of years, I’ve been thinking a lot about what could make things better for Nolan and other heart babies.  Here’s an example:

A week or so ago, Nolan was having an absolute cow at home.  He was fussy and didn’t sleep well.  My first thought was that he might have an ear infection, so I called his pediatrician’s office at 8am one morning for a 9:30ish appointment.  Since I had to go to work, my wife took him in.  Since I called that morning, he wasn’t able to see his normal pediatrician, but we figured that would be ok.  Sure enough, he had a double ear infection; but what happened prior to the diagnosis is what got me thinking.  So a nurse came in to check Nolan’s vitals (and not the typical nurse who sees him) and my wife mentioned that he has HLHS.  Her reply, “What’s that?”  Yeah, that’s a problem.  I’m sure doctors and nurses have to deal with a lot of people assuming they know about every disease ever discovered, but c’mon son…he has a chart, why don’t you give it a look-through before going in to see him?  And that’s one of the things that infuriates me as a heart parent: when people come in to see him and don’t bother to look over his info and I find myself saying the same thing oooover and oooover again.  Well my wife then asked, “Aren’t you going to take his sat reading?” to which she replied, “Well…I guess, if you want.”  UGH.  Again: CmonSon

As Nolan’s parent I am more than happy to advocate for him and other heart kids, I really am.  But sometimes I feel like we as his parents are tasked with the sole responsibility of attempting to coordinate his care.  Each of his physicians and therapists do a great job in their own regard, but it’s like they exist on their own separate islands…islands they can’t seem to venture away from, so it’s up to me and Bekah to put Nolan on our back and swim island to island.  So how do we connect those dots?

I think the answer lies with cardiology.  Nolan’s heart condition will always be the biggest issue, and I absolutely love his heart team, they do an incredible job.  This is not meant to be critical of them, it’s merely a suggestion and one that I think can benefit ALL heart kids in ALL heart programs: the heart teams need to take the first step in connecting the dots.  Imagine when you’re about to leave the hospital after your child recovers from the Norwood Procedure: if your cardio team asked, “Who’s your child’s pediatrician? Would it help if I talked with them and offered to educate them about your child’s needs?”  WHAAAAAT?  It simply gives my child the best shot at getting the best care. 

Let’s take it even further.  Let’s say you’re traveling and – God forbid – something happens to your little one.  You can avoid the “Durr, what?” answers from a different care provider if maybe your doctors provided you with a packet that laid out everything about your heart child in a doctor-specific packet.  That way you can say, “Here is what his doctor says about his condition.” 

It would be great for G.I to keep up with speech therapy or for G.I. to keep up with cardiology.  And maybe it does happen to a small degree, but I think more could be done.  I know as a heart parent it’s annoying/exhausting when you see a new doctor and mention his sats are in the mid-80s and they’re like “OH MY GOD!”  It’s enough to care for a heart baby and the advocacy associated with it, but a little help in that department wouldn’t hurt.  Everyone could stand to learn more and communicate more.

32for32 Project Complete!

For the past few weeks my wife and I have been doing these free youtube workouts from Fitness Blender.  They’re pretty awesome and you should check them out.  Anyhow, at the end of every nearly barf-inducing workout it will say “WORKOUT COMPLETE” on the screen and it feels like you made it.  Then you want to eat a whole pizza.  I’m just kidding. 

Anyhow, it feels good to accomplish something, whether it’s a workout, assignment, or a big project.  In my last post I wrote about my 32for32 Project: I was going to do 32 acts of kindness for my 32nd birthday in order to educate people about Congenital Heart Defects.  Well I did it!  PROJECT COMPLETE! 

I worked pretty hard to plan out this project, choosing where I would go and when, and I  did a lot of early legwork to download wish lists and contact the people I needed to contact.  I did a really awesome interview with the Union County Weekly, who posted a wonderful article on their front page, and I even did a quick radio interview with New Life 91.9.  As we got closer to the 14th, the day the project was to start, I ran into some problems…SNOW.

SnowInformer

No, not him.

So the Charlotte area decided to have the most snow in a decade.  A whopping 8 inches.  Now where I’m from in Connecticut, that’s child’s play…but here?  Freakin’ APOCALYPSE.  There’s no snow plows and everyone just gets stuck at home.  Well of course, the snow was still on the ground on Thursday, so I got several messages from my 32for32 stops that they would be closed on Friday.  Great.  I ended up having to be really creative with changing my schedule around to accommodate everything or even add new things.  In the end it all worked out.

So on Friday we decided to brave the snow together as a family (it was pretty melty by then) and hit the ground running.  By Monday the 17th at 4:30pm, I was DONE with the project.  Here’s the list from 1 to 32:

Excited to say the 32 for 32 Project is complete! Here’s the complete rundown of the 32 acts of kindness:

1. Welcome our new neighbors
2. Help a neighbor get her car up her snowy driveway
3. Giving scratch-off tickets to a waitress at a local pizza place (she won $20)
4. Buying someone’s meal at that pizza place
5. Buying a gift certificate from the pizza place and giving it to a cashier at Fami…ly Dollar
6. Bringing food and diapers to With Love From Jesus

7. Bringing donuts to the Hemby Bridge Fire Department to thank them
8. Paying for someone behind me in the drive-thru
9. Bringing fresh cinnamon bread to Union County Health Department Employees
10. Bringing clothes for a tough little heart baby
11. Donating food and other items for the Union County Community Shelter
12. Giving Blood with the Community Blood Center of the Carolinas
13. Going to Great Clips and paying for someone’s haircut
14. Bringing lunch to one of the Producers at church
15. Donating clothes to Goodwill
16. Giving a gift card to a Starbucks barista
17, 18, 19, 20. Cards for some special people
21. A card for a deployed soldier via Operation Gratitude
22. A gift for our mail carrier
23. Reading a story to kindergarteners at Poplin Elementary School
24. Donating formula to H.E.L.P Crisis Pregnancy Center
25. Bringing bagels and CHD Awareness bracelets to nurses at Levine Children’s Hospital
26. Gifts for a new heart baby in the hospital
27. Bringing donuts for the residents of Ronald McDonald House
28. Donating clothes to Crisis Assistance Ministry
29. Donating 20 pounds of items for Second Harvest Food Bank
30. Donating clothes to Second Chance Boutique
31. Bringing pantry items to Matthews HELP Center
32. Bringing 4 dozen balloons to abused & neglected kids at the Children’s Attention Home

WOW.  I was really humbled by the experience.  I met some great people, I hopefully made an impact, and I got to share the news about Congenital Heart Defects! 

 
I have to say that some of the acts of kindness stood out to me.  First was the Union County Community Shelter: I’ve volunteered there before, but this time I noticed 4 or 5 little children there…around 4 or 5 years old or so.  It was sad.  I have to say my family is blessed…we don’t have a lot, but we have food and a roof over our heads, thank God. 
 
The second, of course, is getting to visit the CVICU staff at Levine Children’s Hospital.  They’re like our 2nd family and we love them to death!
 
I never read to a classroom of kids before, and I was a little nervous about reading to kindergarteners.  Oh man, they were awesome.  We read a funny book and they were so well-behaved and polite.  I loved it and I can’t wait to do it again!
 
As I get pictures from the project, I will work on posting them here with some more stories from my experience.  I just want to remind everyone that the 32for32 Project wasn’t about me…it was about my son and all the other heart kids out there who need a voice.  It’s about those agencies who depend upon the kindness of others to help them feed the hungry and clothe the naked.  I want to encourage everyone to try their own Acts of Kindness Project for their birthday…it will really open your eyes to the needs right there in your back yard.  And I am a firm believer that when you give of yourself to do kind things for others, your situations don’t seem half as bad. 
 
Acts-of-Kindness

The 32 for 32 Project

Acts-of-Kindness

It’s hard to believe there are only a few days left in Congenital Heart Defect Awareness Week.  The great part, though, is not only did we have a great week, but that EVERY week for my family is CHD Awareness Week!  I wanted to send off the official CHD Awareness Week (and beyond) with a bang.  My 32nd birthday is coming up on Feb 17th and I wanted to do 32 acts of kindness for my 32nd birthday, in an effort to continue to promote CHD Awareness.  I’m calling it the 32 for 32 Project. 

From Feb 14-17 I will be running all over the Charlotte area doing kind things for others.  These include bringing bagels to the CVICU nurses at Levine Children’s Hospital, bringing donuts to the residents at the Ronald McDonald House, donating clothes to those in need, buying lunch for someone who is hungry, donating food to a food bank, thanking local firefighters, writing letters to special people, reading a book to a local kindergarten class, and the list goes on and on.  With each act that I do, I will leave behind a little card explaining why I’m doing it, and it looks like this:

CHD FLYER

 

I have to say I am VERY excited about it.  Please note, though, that this project isn’t about ME.  It’s about my Nolan and ALL the heart kids in the Charlotte area and beyond.  The whole point of this is to go above and beyond myself not to just help people who are hurting, but to make people aware of CHDs.  So far, the response has been overwhelming.  This past Friday an article appeared in our local free newspaper, the Union County Weekly about the 32 for 32 project…you can read it here: http://www.unioncountyweekly.com/news/2014/02/kindness-in-the-name-of-nolan/

I’ve also been contacted by a local news station, who wants to follow me on one of my excursions either Friday or Monday.  I will also be talking with a local radio station as well.  This is GREAT because it will provide a means for MORE people to hear about CHD Awareness! 

This project has been a lot of work, but it’s been a lot of fun to plan.  I know the 14th thru the 17th are going to be bonkers and I’ll be exhausted when it’s done, but it will be worth every single moment.  My hope is that people will strive to do the same thing, no matter their age.  Maybe you can’t do all those acts for your birthday….so instead, maybe you can do those acts of kindness throughout the year.  That would be awesome: if everyone worked to do nice things for one another, think about how our world will be changed. 

I am going to try my best to tweet all my stops using the hashtag #32for32 (@TeamNolan1) and I also plan to upload photos to Nolan’s facebook page as well (facebook.com/SupportTeamNolan).  I want to send a big thank you to everyone for the support!

Making the Interstage Better

I’m going to say early on that this is merely an opinion post.  On Sunday we got to celebrate Nolan’s graduation from the CHAMP Program and it was really exciting.  They developed a really nice way to improve care during the insterstage (the period between the Norwood Procedure and the Glenn Procedure).  I have read a lot online lately, though, that pediactric cardiology teams are working to continually improve the insterstage, and that’s a GREAT thing.  So having been through this period already, I got to thinking about how we can make the interstage better.  The best idea I’ve come up with, thus far, is one that is gleaned from my work experience.

As I’ve mentioned in a blog post or two, I currently work at a hospice.  What makes hospice different from some other kind of care is that it’s considered an “interdisciplinary program”.  What the heck does that mean?  Well it basically means that hospice approaches care for both patient AND family/caregiver with a team effort.  Hospice patients and families have access to doctors, nurses, CNAs, social workers, chaplains, volunteers, and bereavement counselors.  That’s pretty dope, right?  I agree.  So here’s what I’m thinking: heart centers should REALLY look into utilizing an interdisciplinary approach for their interstage families.  Let’s take a look:

  1. Physicians: this one is obvious.  During the interstage there will be frequent appointments with your child’s cardiologist, probably once a week.  This is crucial to insure heart function remains very good.  I think it’s safe to say this one won’t change a bit, and I’m ok with that.
  2. Nurses: a lot of programs differ when it comes to at-home nursing.  We actually had a nurse come out to the home a few times, but she was more concerned with making sure we knew how to properly weigh Nolan, draw his meds, take his sat reading, and give his meds and feeds.  Nothing too earth-shattering.  After a few visits she stopped coming because she felt we had it under control.  Unfortunately to me, that’s not enough.  Questions come up all the time and I think we could have really utilized a nurse on a more regular basis…if anything just to give us peace of mind.  I think this is the really important link for an interdisciplinary program: if nurses can’t make regular visits, then I think they should make regular calls.  Don’t put the ball in the family’s court to always be the one to initiate contact…I think it should be a two-way street.
  3. CNAs: this one is a little tricky because I don’t know where a CNA would fit into a heart program.  In the hospice world they assist with bathing, feeding, etc.  I’m thinking that a CNA could be someone to come and keep an eye on the baby to provide some respite care for the parent(s).  I know that at times my wife was home with 3 kids at a time.  While she’s a trooper, she could’ve definitely used a break.
  4. Social work: this is where I think an interdisciplinary program would provide the biggest benefit during the interstage.  No, the social worker isn’t someone who is just making sure your child is fed and clothed (though they will be checking for that too).  The social worker’s job is to help you as parents through any kind of psychosocial issues associated with your child’s care: the stress, the frustration,  the anger, the hurt, the sadness.  Imagine having someone to talk with about it, even if it’s just once a month by phone.  I really think MANY strides can be made in this area.  Heck, social workers can even help families with other issues such as navigating the world of SSI benefits, how to get help with bills, where to find help if you can’t buy groceries, etc.  It’s a MAJOR win.
  5. Chaplain: chaplains are awesome because they’ll work with you no matter your belief system.  There are a lot of difficulties, spiritual or not, associated with caring for a child with a severe illness.  It’s taxing and will deplete you physically, emotionally, and even spiritually.  Chaplains can assist with “unpacking” all those feelings and offering you support through your journey.
  6. Volunteers: I’ve written a lot about the Cuddle Crew at Levine Children’s Hospital and how they were an absolute LIFESAVER.  They took care of Nolan in the hospital whenever we couldn’t be there.  I think the same concept in-home would be awesome and would provide the same respite services, technically, as a CNA would.  Imagine having someone come once a week or every other week to hold you baby while you took a shower or even took a well-earned breather?  Awesomeness.

Sounds pretty good, right?  I know it does to me.  What will it take to incorporate something like this into a heart program?  Probably a ton: personnel, funding, etc.  It’s a lot of work.  But this is all about ideas, right?  It’s my hope that one day something like this could be a reality so heart families can enjoy the same excellent support at home that they received in the hospital.  And I’m willing to bet we would see a lot more success for babies during the interstage as well.

So what are your ideas about improving the interstage?

CHAMP Graduation!

Some time ago I wrote a post about the CHAMP Program at Levine Children’s Hospital (read it here: https://hlhsdad.wordpress.com/2014/01/08/the-champ-program/).  Long story short, the CHAMP Program was designed by the heart team as an effort to keep heart babies healthy and surviving during the period between the Norwood Procedure and the Glenn Procedure (aka the Interstage).  From Feb 13, 2013 to August 7, 2013, we weighed Nolan everyday, read his pulse ox, and recorded it in a binder.  After the Glenn Procedure was complete, we were told we could throw the binder away.  Did we throw it away?  Absolutely not, but it was a great feeling to know he was past this point and on to bigger things!

Well yesterday was a very exciting day as we got to bring Nolan and join in with 5 or 6 other families to celebrate our little heart warriors with a CHAMP Graduation ceremony at Levine Children’s Hospital! 

WP_20140209_026

The Ceremony was a lot of fun: we got to see all of our friends from the LCH staff, including Nolan’s absolute fav nurse:

WP_20140209_033

And even Dr. Maxey, who did Nolan’s Glenn Procedure:

WP_20140209_039

It really makes a heart daddy proud to hear everyone gush about how well your little one looks.  It’s always great to get the opportunity to see everyone when it’s NOT for an appointment or, even worse, an admission of some sort.  It was really good to meet other heart families as well: some who we’ve met before, some who we’ve been communicating with on Facebook, and some who have even read this blog (I was genuinely touched by that).  I think it’s good to get heart families together like that so we can continue to encourage each other…and show of our little monsters too!  Of course, another cool thing was having Greg Olsen in our class as well, since his son finished the CHAMP program just before Nolan did.  I can’t say it enough, but it’s always really cool getting to chat with Greg: he takes the time to talk with everyone and be the best help possible.  I know he leads an incredibly busy life (and man, did the Panthers have an awesome year or what?!), but he always takes the time to talk, and I always enjoy it:

WP_20140209_040

Nolan also got some media love that day (check it out on his facebook page: facebook.com/SupportTeamNolan).  He was loving all the attention, I know that’s for sure!

Overall it was an awesome time, and it was a great honor to meet all the other awesome families:

WP_20140209_036

Most importantly, though, I’m really glad we all got to do it as a family:

WP_20140209_038

 

So congrats to all the CHAMP Grads!  Onward to bigger things!  Get a job!  Just kidding.

20-week Questions

Continuing my posts for Congenital Heart Defect Awareness Week, let’s talk a little bit about pregnancy.  I hope that all pregnant ladies and all dads-t0-be get to read this, because it’s very important.  The 20-week ultrasound is the “big one” and often the one where you get to find out the gender of your baby.  This is also a crucial ultrasound for many people because it’s often where – unfortunately – they find potential heart issues with a baby in utero.  Also unfortunately, some heart conditions are missed during this ultrasound because they don’t always look as closely at the heart as they should.  I know, it’s sad…but it’s true.

So if you know someone who is having a baby, make sure they read this.  If you are having a baby, please read this and remember this.  Here are the questions you should ask at your 20-week ultrasound:

  1. Is the baby’s heart rate normal?  A normal heart rate range is 120-180 beats per minute.
  2. Did you look at the arteries?
  3. Are the heart and stomach in the correct position?
  4. Do you see FOUR chambers in the heart?
  5. Is the heart function normal?

Early detection of a CHD is preferable so you can prepare for the best treatment.  It’s not the best news to get, but trust me…it’s better to be prepared than shocked later.  And if your baby’s heart looks great, then GREAT!  Celebrate!  If not, please know that there great treatment opportunities in place, and advances are made all the time.

Moms, please be sure you ask these questions.  Dads, please be supportive and ask these questions too.  Dads, please be sure you’re actually AT this ultrasound…you need to be involved, healthy baby or not.  As parents, it’s your responsibility to advocate for the best care of your child; so ask those questions and demand they look more closely at the heart…every…single…time.

20 Week

CHD Awareness Week!

chd ribbon

 

February 7-14 is Congenital Heart Defect Awareness week!  This is a great opportunity for heart families everywhere to really share their stories and raise awareness.  Awareness leads to funding, and funding leads to research!

There are a lot of awesome things going on this week, and I’ll be blogging about it as much as I can…I’ll just say you don’t wanna miss it!  So let’s start this party off right…since we live in the Charlotte area, I wrote to the Mayor’s office to ask if he would sign a proclamation declaring it CHD Awareness week in Charlotte.  And guess what came in the mail yesterday:

CHD Week Proc

 

How awesome is that?!  It’s really incredible that not only does Charlotte have an incredible heart team at Levine Children’s Hospital, but that Mayor Cannon supports heart families too!  I plan to bring frame this and present it to Nolan’s heart team this week.  As much as I would love to keep it, I definitely want to share it with all our local heart families!

Now for some facts you need to know about CHDs:

  • CHDs are the most common birth defect
  • 1 in 100 babies will be born with a congenital heart defect
  • 40,000 babies will be born with a CHD this year.  That’s enough to fill Madison Square Garden…TWICE.
  • There is no cure for CHDs
  • CHDs are the leading cause of infant death due to birth defects
  • Despite the prevalence of CHDs, funding for research and treatment remains embarrassingly low

Be informed…then spread the word about CHDs!  Please continue to read the blog this week to learn more about CHDs and find out other cool stuff that’s going on.

SUCCESS!

Pretty much since his first surgery, Nolan has always been on a medication of some type.  In a previous post I wrote that Nolan’s cardiologist instructed us to take him off aspirin, so the only meds he was on was for reflux and bowel motility.  Nolan’s reflux was bad…oh so bad.  I mean this kid was Niagara Falls, he’d spit up everyone and it would sometimes soak through his car seat.  Nasty.  I think we did laundry daily and 99% of it was spit rags and towels and blankets.  Heck, we couldn’t go anywhere without Nolan spitting up after being in the car for about 3 minutes.  This didn’t help at all with his weight gain either.  It seemed like he was growing very slowly.  In fact, it seemed like he was at 16 pounds forever. 

I have no idea what happened, though, but one day Nolan decided he was done with spitting up.  We kept giving him the meds, but one day I was like “Hey…when was the last time he spit up?”  Days turned into a week…so we tried to back off the reflux meds.  Still no spitting up.  What?!  A week turned into a month.  Still no spit ups.  You read that?  NO MORE SPIT UPS!

  hallelujer

I still have no idea what brought on this lack of reflux, but thank GOD!  Next up was keeping an eye on the next med.  Nolan was pooping just fine. In fact, his farts could kill a gorilla.  That kid is NASTY.  So we backed off the other med…and he was fine. 

Say WHAAAT?

Yes!  So recently my wife took Nolan to a G.I. appointment and mentioned it to the G.I. Doctor and he said it was fine with him, especially if Nolan’s bowel motility is fine. 

So in January 2014…NOLAN WAS OFFICIALLY OFF MEDS COMPLETELY!!!

ballin

DumpingMeds

Cue the Frustration

I’m going to write this blog post as a “Positivity Sandwich”…so here’s some good stuff.  I think being around such a massive family during Christmas in Florida helped Nolan tremendously.  Why?  Because people eat…and a lot of people eat a lot.  There must’ve been like 32 people sitting at the table in the dining room whenever we’d eat together…and I really think Nolan felt left out after seeing everyone eating while he’s on a feeding tube.  So once we got home, he’d pitch an ever loving fit whenever he’d see one of us eating something.  That, and he’d try to reach for it.  So we obliged him with whatever we thought was soft enough for him to handle: cheesecake, baby food, yogurt melts…you name it.  And he ate it!  Granted, it wasn’t a huge amount, he’d eat pea-sized amounts each time, but this was a HUUUUUUGE turn in the right direction.  Prior to this, he’d been doing tons of swallow therapy but showing no interest in eating.  We determined his favorite thing to eat was veggie straws, because he can hold them in his hand and they dissolve easily in his mouth.  Win!

Good news, right?  Now for the URRGH stuff.  Sometime back when Nolan was having some ear troubles, my wife took him to our Pediatrician’s office.  Unfortunately our normal doc wasn’t available so Nolan saw another one.  He said something to my wife along the lines of, “Did you know he’s got a submucosal cleft palate?”  WHAT?  What the heck is a submucosal cleft palate?  We’d look in his mouth and wouldn’t see anything.  Even my father in law looked his mouth and didn’t notice anything.  Heck, his cardiologist made a confused face when we mentioned it to him.  So we made an appointment with a cranio-facial surgeon to take a look at him.  That appointment, due to Nolan’s flu issue, didn’t happen for awhile.  It happened in January 2014.  My wife took Nolan and it was confirmed.  He had a fissure in his submucosal cleft…but the doc wanted him to keep doing speech therapy and come back in several months.  I’d be lying if I said I had ANY kind of positive/hopeful outlook about this.  I was extremely frustrated and deflated.  Nolan was doing so well…his heart was functioning great and he was making some strides with eating.  Now this.  Would he require surgery?  We didn’t know.  How would this affect him long-term?  We didn’t know.  All we could do was wait.  I remember being in my office when my wife called me with the news and I was just overwhelmingly sad. 

Now back to the positive…after all, I’m an optimist by nature.  The good thing about taking some time to think on things is that it lets you look more “big picture.”  I did some research on the interwebz, and even chatted with a physical therapy manager about Nolan’s condition.  I learned that there were techniques to feeding kids with this condition that could be very successful, and that this could’ve been the cause of his difficulties feeding in the first place.  Interesting.  While I’m still amazed it hasn’t been caught for like a year, I’m glad they found out.  If Nolan does have to get surgery, that’s gonna be horrible and I’ll be sad…but long-term it should help him with speech and eating.  There are also lots of people, I learned, who get nothing done.  They learn feeding techniques and learn to speak just fine.  So we’ll see…and we’ll hope…and we’ll pray.  Without that, the negativity will eat you alive.  So here’s to hoping our little fighter continues to beast his way through all this!

Christmastime is Here…Cue the Traveling Fear

Now that our twins celebrated their first birthday, it was time to look ahead to even bigger things: Christmas.  But no no no, this wasn’t going to be Christmas all snuggled up at home just the 5 of us and the dog; we were going to pack everyone up and drive down to Florida to be with my wife’s family for a week.  Before we get to that, let’s talk about home.  Last Christmas was spent half at home and half at the hospital with Nolan, who was still intubated with his chest open.  I gotta tell you, spending Christmas in the hospital is surreal, and while he was getting awesome care as always, it just kinda sucks the joy and wonder out of Christmas, since the only wish I had was to have Nolan home.  Now that he was home, we had the chance to really enjoy Christmas as a whole family.  As Hudson gets older, he absolutely loves Christmas and the twins seemed to enjoy the tree and festivities:

BoysSanta

Now onto the travel part of our tour.  We’ve made the trip plenty of times: when it was just my wife and I, it would take us somewhere around 7 hours to make the drive.  When Hudson was born and we brought him, it was a little bit longer, but we were still able just to pack up the car and go.  This time, preparations were just bonkers.  Not only did we have to take the van, but most of the seats in the van would be filled with people.  Me and Bekah in the front, Grant and Nolan in the next 2 seats, then Hudson in the back with the other half folded down.  And we loaded the mess outta that van.  We had a suitcase for me and Bekah, a suitcase for Hudson, and one for the twins.  Then we had to pack snacks, formula, feed supplies for Nolan…ugh, just thinking back on it makes me itch. 

For me, though, the worst part wasn’t so much the packing or preparation…it was the growing paranoia I had as our departure date got closer.  I started to focus a whole lot on all the “what if’s”: What if Nolan’s feed pump stops working?  What if something happens while we’re driving?  Will we be able to find a decent hospital?  Will that hospital know how to treat Nolan?  I know, I know…paranoid.  But for me they were legit concerns: we’d been through so much with this kid, that I didn’t want anything to go wrong.  If I forgot to pack socks or something, that’s one thing, but medical problems are another.  My father-in-law is a Doctor, but he was still 7+ hours away.  We just had to GET there.

We made the decision to (potentially) make the ride easier on ourselves by splitting up the trip both ways and staying in a hotel for a night.  We decided on Savannah as a good stopping point.  I priceline’d a hotel (love me some Priceline) and it seemed we were all set to go.  As they say in infomercials, though, “BUT WAIT!”  As we were starting to load up the car, Nolan was taking a nap in the swing.  I walked over to check on him for a quick minute and noticed that his feet and nail beds were a little on the bluish side.  Not full-blown Smurf, just a little bit.  Sometimes that would happen to Nolan if he’s got a stuffy nose or gets super fussy.  Usually we’ll calm him down or get him sitting up for a bit and he’s fine.  This worried me a bit.  We hooked him up to the sat reader and believe it or not they were reading in the mid-80’s, so it was a little weird.  Eventually, though, it settled down and he was just fine.  Turns out he had some horribly bad diahrrea, which made the first part of our trip a BLAST (lol get it?).  Sorry, that was bad.

Anyways, off we went…and our drive went well: we had Hudson entertained in the back and the twins were relatively happy and we were making good time.  We were working our way through South Carolina, maybe 90 minutes or so from Savannah, when we hit traffic.  I HATE traffic.  I know everyone does, but I can’t stand it.  The 90 minute drive took seemingly forever, and when we finally got to Savannah we were all tired, hungry, and cranky.  Luckily, though, we managed to have a good night’s sleep.  After that we hit up Tybee Island for some winter beach fun before hitting the road again:

TybeeFamily

When we got to Florida, the kids had a lot of fun.  My wife is from a HUGE family, so there were lots of people to play with the kids.  Nolan got over the squirts and was back to his happy self again.  We even got to go to LegoLand as a family.  Hudson loved that, but even in the winter, Florida proved to be a little too hot for Nolan.  He was sweaty and cranky and we knew we couldn’t have him outside much longer.  Luckily LegoLand has what’s called the Baby Depot: it’s an air conditioned building with a changing/feeding station and a play area for little ones.  Grant crawled off to play legos with Hudson, and we laid Nolan down on a big bean bag chair in the corner.  As soon as he hit that chair he zonked out.  Poor little guy.  Yes, extreme weather is difficult for heart babies, you have to be really careful of the heat as well as the cold.  I have a feeling most of our family trips will be in the Spring and Fall. 

We eventually made our way back – with another Savannah stop in between.  It was a really good trip: no major issues with Nolan aside from the early tummy troubles.  None of my paranoia came true, which is great.  I can’t lie, I was expecting it to be a trip of horrors, full of screaming kids and an extreme lack of sleep.  But I was pleasantly surprised.  I know we won’t be able to make tons of trips with our little ones, particularly Nolan (it’ll be easier once he’s eating by mouth, hopefully)…but we got the most out of this one and I will cherish the memories.